PSP Association
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Hi everyone, been writing posts a few times when I have questions but don't have much activity on here, I have been reading through people's post and it's heartbreaking and got so much good information.

At moment I feel my uncle is at the final stages of psp, not taking in much fluid or food, bowels not moving and urine slowing down too, swallow as really weaken, use to love to sit in his chair in kitchen now he doesn't want to get up in morning, and goes to bed for hour in the day, at moment has a chest infection, can't speak any more and in his really weak days would fall to the side he could sit all day with his eyes closed but he dose try to open them, it's so sad and heartbreaking to watch as I feel that this is the end for him. It's a horrible horrible to see someone you love suffering and there's nothing you can do, I feel so helpless for my uncle now,

Heartbroken but I know that there are many many people out there going through the same.

5 Replies

hi trice 58

i know how you feel - i have PSP but hav eno hildren to watch me going down hill and it is the 1wt time tha ti have been glad that my loved one scant see me getting worse

you are obviously very fond of your uncle and plz tell hjim this a she know shwa tis going on around him despite not being able to respond

;lol JIill




Hi Trice268. I feel for you. I cared for my mum. It was the toughest 5 years of my life, and the most rewarding. I am so glad I could be there for her. It was my finest hour.

I know that your presence will be an enormous comfort to your uncle. I took mum out, usually by car, every day, right up until a couple of days before she passed. If he won't go out he will still like to hear your news. Or read to him. Or hand and foot massage. He will benefit from having a loving family member ensuring that he has everything he needs to keep him as comfortable as possible. So many people fall away, lose touch with people who are suffering.

This forum may seem quiet. I hardly ever comment, but I do look. It is a way of keeping a link with my mum. I miss her. I also miss being the person I was as her carer.

Very best wishes to you. Do what you can for your uncle, I am sure you will feel good about your input for the rest of your life.


Hi Formercarer,

You are right! It is a very full filling "job" (not the right word, but can't think what I mean). I am very proud of myself, the way I am adapting to my caring role. I know I am showing enormous powers of patience, that I didn't know existed. I am a completely different person now. Positive feelings just pour out of me (most of the time).

Of course I have down days, I am fighting PSP and all that goes with it, my husband is being taken from me, under my very eyes. One thing is for certain, it's going to have to work bloody hard and long to win!!!

Lots of love


1 like

One thing that we can all do is pour on the LOVE. You can and are in control of the love given to the patient. Touching is another thing we can do and control. Although PSP is hard to deal with we must do what we can. If we do we will look back with no regrets and won't be asking "Did I tell him I love him enough?" "Could I have made him more comfortable with a neck, arm, rub?" Do your best and you won't have anything to be regretful for. Hugs, Jimbo


Wish you luck... I just had a depressing phase with my dad.. His condition is exactly as you describe it... But this forum keeps me going. I hardly ever commented before, was only reading up.. But I guess it's nice to know that there are people who understand exactly how you feel...!


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